Rheumatology Appointment

[Suffererc]

After 4 attempts my GP has got me a Rheumatology Appoint because I am ‘struggling to get below 2mg Pred’ after 5 years.

I am not struggling. I believe it will go when ready and 6 years is more the norm.

What am I to expect? what am I going to say? Shall I tell him his job about the 2 year myth . Is he going to ask me to go on MTX. Letter only came today, appointment Monday .

I am presently on 2.5 after a recent flare. Be down to 2 end of next week! 🤪

[DorsetLady PMRGCAuk volunteer]

Just go, listen to what is said, smile politely and say at such a low dose you really don’t see the need to add in any extra medication [if that is suggested].

You never know, you may be pleasantly surprised..they may think as you do… 😊

[Suffererc in reply to DorsetLady]

thank you 😊

[PMRpro Ambassador]

What a waste of time and resources!!! In fact - I'm surprised they gave you an appointment.

We know that Prof Dasgupta told us in a seminar that he often keeps patients at 2-3mg long term as it prevents relapses. Anyone who wants to add MTX or LEF for a patient happily at 2mg is a bit crackers!

What happens if you go any lower?

[Suffererc in reply to PMRpro]

nothing happens. I just start getting impatient, thinking PMR has gone and skipping done doses. Ie I only go to 4mg taper instead of six. Or this this I think the Covid jab caused a flare. I am not adding anything so it will be a waste of time if he suggests it. Agree waste of time but GPhas made 4 referrals 😊

[PMRpro Ambassador in reply to Suffererc]

You do need to bite the bullet at some point though - and the last bit is often the hardest - plan out a 1/2mg drop over a 6 week taper and stick to it. You know after the time you've been here that this last bit is just as hard as the rest and that 2mg is LOADS to manage PMR,

This isn't about pred or PMR is it - it is about mental attitude and an easy life? Feeling good, popping 2mg pred a day is very comfortable. You don't want to get out of your current comfort zone

[Suffererc in reply to PMRpro]

when I say nothing - I give it 2 weeks when the pain is there until I start to shuffle, the hips and shoulders ache. But it is only telling me to slow down and keep to the taper 😊

[SheffieldJane]

I would be content to be where you are right now. I would do as DL advises.

[PMR2011]

agree with what’s been said. If you had a “recent flare at 2.5mg” then would stay where you are a good long time. When I went off meds it took 3 months for the inflammation to build again where I got symptoms and had to go back on. And such a low dose, would definitely question the need for any additional meds. Good luck!

[Bramble2000]

I’m sure they will be more than happy to refer you back to the GP if you say you are content with how things are. If they mention Methotrexate, just say you are ok on the 2mg Pred, thank you very much. If I were you, I would not be going down the M route! X

[PMRpro Ambassador in reply to Bramble2000]

Would or would not?

[Bramble2000 in reply to PMRpro]

not. Sorry

[Suffererc in reply to Bramble2000]

I will not be taking MTX under any circumstances. Made a Rheumatologist very cross when I refused when I was taking 5 mg once before. Anyway at 2.5 I am nearly there (6 years) 😊

[Bramble2000 in reply to Suffererc]

My rheumatologist is insisting on methotrexate because I can’t tolerate the Prednisilone. I’ve been housebound with this for about a year now.

[Lenore58 in reply to Bramble2000]

I’m sorry prednisone doesn’t work for you. Have you considered LDN?

[Bramble2000 in reply to Lenore58]

steroids work very well but I can’t tolerate them. What is LDN?

[Lenore58 in reply to Bramble2000]

Hi, LDN is low-dose naltrexone. You can Google it with PMR added and find some helpful info. It seems to have helped quite a few people get off of prednisone. A close friend of mine was one of them. She had a naturopath who prescribed it. Many conventional docs won’t. I’m traveling, but when I return home I am going to try to get in to see her naturopath.

It’s hard to get for PMR, because it is an off-label use. But it’s inexpensive and has virtually no side effects, so definitely worth trying if one can find it. It looks s thought to help heal the immune system to fight auto-immune illnesses.

Here are a couple of articles:

ncbi.nlm.nih.gov/pmc/articl...

ldnresearchtrust.org/barbar...

[Bramble2000 in reply to Lenore58]

thanks

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

It has been mentioned on here a few times, but doesn’t seem to be particularly successful for PMR….. if you type LDN into search facility and then filter by community you’ll find related posts. Just for info Lenore58 is in US not UK so protocols may be different.

[Bramble2000 in reply to DorsetLady]

looks interesting for ME. My son has severe ME.

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Well that may be a bonus then, even if it’s not for you……

There is a forum on HU which might also prove interesting/helpful -

healthunlocked.com/ldnresea...

[Bramble2000 in reply to DorsetLady]

thank you x

[Nagswoman]

I took MTX for 3.5 years but stopped it as I was sick of permanent nausea.

[Suffererc in reply to Nagswoman]

I always wonder if MTX is so good why they don’t give it to us instead of Pred. I don’t know if that will be their plan but I won’t accept anyway 😊

[PMRpro Ambassador in reply to Suffererc]

That's what I always ask of the people who say it is so wonderful.

[PMRnewbie2017]

Personally I find getting below 2.5mg and staying there is very difficult. I have had three failed attempts over the years due to mini flares or lack of cortisol. Currently I am tapering again to 2mg. This time I went from 2.5mg to 2.25mg using DSNS and stayed at 2.25mg for 3 weeks before starting 2.25mg/2mg DSNS this week. I have also noticed more osteoarthritis pains in my thumbs and neck since getting this low so one always has to be on the lookout for non-PMR induced soreness which has been camouflaged by the Pred.